“I wish I knew what was going on in his mind,” my mother would say about my stepfather. He’d be staring straight ahead, hands fidgeting on his wheelchair armrests, without a hint of facial expression. If he was hungry or bored or even in pain, she couldn’t tell. If she asked him directly what he was feeling, he’d just look at her blankly.
Years before, in the middle stages of his Alzheimer’s dementia, it had devastated her when my stepfather would snap angrily at her without a reason. But this was worse for her. Now he was lost inside himself or had forgotten the words to express himself. He was a riddle, a mystery; someone who my mother felt helpless to decipher.
Psychologists have developed theories to explain how situations like this affect family caregivers. In her many books, author Pauline Boss, a leading family therapist, researcher and educator, coined the term “ambiguous loss” to describe the extreme stress family members feel when a loved one is present in body but seemingly absent in mind, as with advanced dementia. Likewise, Joan Monin, Ph.D. and associate professor, Yale School of Public Health, and Richard Schulz, Ph.D., have written that, if relatives believe a loved one is suffering but can’t figure out its cause or how they can relieve that suffering, then those family members suffer in kind. These psychological insights can be summed up simply: We hurt when the people we love are disappearing beyond our reach and understanding.
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With its endless tasks and limitless sadness, dementia caregiving is hard enough. Caregivers don’t need to suffer more for their inability to read loved ones’ minds. How can they avoid the distress of feeling responsible for the people they care for without being sure about what they need or how to help them? Here are some ideas:
Think like a professional
Even after living with someone with dementia for years, some family caregivers still half expect to be able to talk to and receive responses from their loved ones the way they interacted in the past. Professionals, such as neurologists, occupational therapists and psychologists, however, try to discern the remaining strengths and growing weaknesses of people with dementia to determine the most effective strategies for communicating with them.
For instance, some individuals in the disease’s late stages may be unable to pay attention for more than a few seconds at a time. Getting the person’s attention first by gently saying his name or tapping him lightly on the shoulder and then using short, simple phrases would be the best way to successfully get across a message.
Or, for example, it is not unusual for those with dementia to slowly lose the ability to fully use and/or understand all the words they once knew. They may need the same meaning conveyed to them in multiple ways with different words and phrases to increase the likelihood that it will be understood. (“Bob and his family will be here soon. Our son is coming to see us. Soon, Bob, Jackie and our grandkids will have lunch with us.”)
Many caregivers figure out and adopt strategies like this through trial-and-error over time. But it’s often helpful for them to step back and intentionally make an inventory of a loved one’s specific thinking skills — such as attention, concentration, language, reasoning, short- and long-term memory and the ability to initiate actions like rising from a chair — to more quickly develop communication strategies that are successful.
Use physical clues and cues
Though family members are not really mind readers, even if they sometimes believe they are, they do become experts in reading a relative’s physical clues — facial expressions, posture, glances — to tell if that person is tired, frustrated or in pain. For many individuals with dementia, these telltale signs persist even after the capacities for attention, language and reasoning have fallen away. Whenever my stepfather grimaced, my mother winced and knew he was in discomfort. She could then take her educated guess about what was troubling him — his old bum shoulder or a new bed sore on his bottom — and take whatever steps she could to provide relief.
Likewise, it is physical cues that best convey meaning to an individual who no longer understands many words or is slow in initiating actions. My mother could say three times, “Please pick up your foot,” without being able to prompt my stepfather to place it on the wheelchair leg rest. But then she would tap his knee and he’d instantly move his leg.
Try not to project
Caregivers’ distress colors their perceptions of people with dementia. They often project their own anguish onto care receivers by assuming their diminished thinking skills are a torment to them or that their blank stares reflect unhappiness. These perceptions aren’t likely true. Lack of responsiveness is a dementia symptom; that isn’t the same as lack of contentedness. Instead, caregivers need to feel assured their efforts to provide comfort make a difference even if a terrible disease now prevents their loved ones from saying so.
Barry J. Jacobs, a clinical psychologist, family therapist and health care consultant, is the coauthor of Love and Meaning After 50: The 10 Challenges to Great Relationships — and How to Overcome Them and AARP Meditations for Caregivers. Follow him on Twitter and Facebook.